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Official Year 1 Update

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  • Official Year 1 Update

    I just got back from my check-up in Houston. Before I detail the results of my autologous (own) stem cell transplant at year one, I want to remind folks: 1) the purpose of HALT-MS is to stop disease progression, not reverse damage, 2) my experience may not be representative of all study participants, 3) HALT-MS included two major components: stem cell transplant and immune system ablation, meaning that one aspect or both could be responsible for my gains, and 4) MS is a disease that is unpredictable, so my gains could also, in theory, just be natural remitting.

    Disease activity. My most recent MRI showed no new or enhancing lesions. However some of the lesions appeared sharper, likely because the MRI machine was upgraded. A team of experts in Canada will be reviewing this, which is standard protocol. I have had no relapses (after having several relapses in the nine months prior to the SCT).

    Walking ability. At year one my max has been 750 meters unaided, almost half a mile (far better than the 100 meter max prior to the SCT)! For the official test, I logged 550 meters. My walking speed, tested over 25 feet, is about the same as the six month mark at about 5.5 seconds. My speed with the walker and forearm crutches is about the same. I'm using my walker far less and just the other day I went three straight days without touching it. At home I usually use a single forearm crutch, and when I'm out and about I use two (I can go 45 minutes nonstop). My longest hike with the crutches has been over 1.5 miles. I still use the walker for cooking, laundry, and nighttime (helpful for groggy walks to the bathroom).

    Dexterity. I believe I improved in the "peg" test on my right hand, hitting close to 25 seconds, but my left dipped a touch into the 30 second range. A little fumbling will do that. My handwriting is holding steady.

    Cognitive. Tested with the PASAT (basically oral math), I improved again. I missed six questions at month six but only three at the one year mark. I still think I should have gotten 100%!

    Fatigue. Still zero.

    Balance. This is a new category, but there has been a change here so I thought I should add it. I can now stand on one leg and hold it for 10 seconds or longer. I don't sway as much with my eyes closed. I can even dance almost as poorly as I could dance pre-MS, ha.

    Lower Body Strength. Dynamite. Better across the board. My shower chair has not been used since 2010. I can "skate" from one leg to another, do repeated squats (20+), and walk on both my heals and toes (with aid) for long distances (50 meters).

    Upper Body Strength. Still improving. Small gains in an area that was already strong.

    Vision. 20/20 with glasses. Pretty much unchanged since month 6.

    Bladder. Pretty much unchanged since month 6.

    Numbness. Pretty much unchanged since month 6.

    Overall. In terms of the EDSS, I have lost a point and a half, dropping from a 5.5 to a 4.0. To my knowledge, no one in the 23 has seen EDSS levels go up and MRIs have been clean for the most part.

    My next battery of tests will be at the two year mark. In the next week I'll start to get immunizations, which will be now and at 18 and 24 months. Also, I have discontinued the anti-viral and antibiotic (and folic acid). Currently I am on zero regular prescription medications. Zero. Even my allergy meds are not needed because I currently have no allergies (thanks new immune system!). That said, my latest blood test revealed that the chemo has lowered my testosterone to levels that are borderline low (a common side effect). I may get on to some form of therapy to treat this.

    So to sum up: improvements continue to impress. I'm driving again (I stopped in the fall of 2009), grocery shopping again, climbing stairs again, and I work out 1-2 hours every day. I plan to rejoin the gym after my first round of immunizations take effect.

    As always I'll post more about further gains and any speed bumps. I go to Houston next month for a Month 13 MRI and will post any news from that when I hear the results.
    Dave Bexfield

  • #2
    Dave I am so happy to hear such positive results!! Your hard work has contributed to your well being so much I'm sure


    • #3
      That's phenomenal Dave. Was the 1.5 drop in the EDSS score since the last 6 month check up?

      Do the techs comment at all on your progress?



      • #4
        Thanks! I was a 5.5 before the HSCT, 5.0 at month 6, and 4.0 at month 12. It'll be real tough to score better than a 4.0 as that would require some serious improvement in a number of areas other than walking.

        Yeah, the techs, staff, and docs all notice....
        Dave Bexfield


        • #5
          That's excellent stuff Dave! In regard to the walking part, do you think you will ever regain your full walking ability without aids? Have you known anyone that has been in a wheelchair and walked again? Keep up the excellent work!


          • #6
            I honestly have no clue how much walking I will regain with this procedure. One person saw big gains after year two and can now play street hockey with her kids (she was in a Canadian trial). Another kid from Australia went from wheelchair to walking. But the norm is modest improvement, not massive. That said, seeing as how only rare drug trials like Campath have shown potentially minor improvement (.5 on the EDSS in cases), a "modest" improvement of 1.0 on the EDSS or better is huge. So I can't complain, going from a 5.5 (pushing a 6.0) to a 4.0. But I do wonder what would have happened if I had been treated six months earlier (when my EDSS was barely a 4.0 and I only needed a cane occasionally).
            Dave Bexfield


            • #7
              You continue to shine! No doubt your attitude has helped the medical technology! Keep smilin' Dave and forge on! Jeannie (Ruidoso)


              • #8
                HALT study

                It has been a year and a half since I had my stem cell transplant. I am so happy that I was able to do this. I no longer have many MS problems in fact it's hard to know if I have MS or not. I'm amazed at how all the medical procedures went for me. I had set backs and my time in and out of the hospital and the SCCA (Seattle Cancer Care Alliance) Fred Hutinson clinic was a total of 6 months.
                I live in Omaha Nebraska.

                My stem cell research was done in Seattle Washington. I rented a place and lived there for the six months.I had to have rotating caregivers.

                There were only 15 of us accepted into this program. So I felt very fortunate to be one of them.

                I remember a quote from Charles Dickens;"It was the best of times and the worst of times."

                He was so right!

                If you want to hear anything else about the HALT study please don't hesitate to ask.

                I would love to offer some of my services to help maintain this sight but if you already have enough help, no big deal. But please contact me if you need to.


                • #9
                  I am so stoked you are doing well, littlev. I'm not quite as far along as you are, but I agree it was worth it even though it was hard. Thanks for the offer of assistance on the website and with folks curious about HALT-MS. Don't be surprised if I take you up on it!

                  Next time I'm in Nebraska I'll drop you a line. And if you ever visit NM, look me up. My door is always open. Well, except in summer. Y'know my A/C bill would be through the roof if I left the door open!

                  Do you keep in touch with any other Seattle folks?
                  Dave Bexfield


                  • #10
                    I am really glad you guys are doing so well. Any halting or recovery is better than the alternative. I am hanging on dearly to the hope I can get into dr burt's study come january.


                    • #11
                      I just finished reading the entire series, and what a tale it was! I am glad you are experiencing enduring improvements and new ones as well.


                      • #12
                        It was certainly exciting! Every month it seems I feel a little better. But the gains day-to-day are small and unnoticeable. It's only after I do something easily that I remember how hard it was at one time. I try not to keep too much of a scorecard, although I'm always testing myself I think. I just can't help it....
                        Dave Bexfield